1. Community
  2. Gut, bowel and stomach
  3. Ulcerative Colitis

anyone recommend surgery?

Posted , 9 users are following.

bustergut1
bustergut1

Hi I became ill in June 2013 was diagnosed with UC in September 2013. I have been on steroids high to low & back to high dosages since then. Had pentasa foam, pentasa tablets, azathioprine,  Humira & now infliximab. Every time my steroid dosage becomes lower I bleed & ended up in hospital just before Christmas. I have had diarrhoea since June 2013! My consultant says i have never been in remission & I should consider surgery. Has anyone any ideas or advice. I'm really fed up with this but surgery is scarey & drastic. Anyone been in same situation & would recommend surgery?

1 like, 35 replies

35 Replies

Prev
  • bustergut1
    bustergut1

    Posted

    Well Good Day then! 7.50am here. Never even crossed my mind about time difference! I'm posting from southern England. We have bowel screening kits sent out to guys over a certain age. You do great work. We have organisations that support Crohn's & Colitis sufferers with websites. There was recently world ibd day on 19th May & a lot of messages on Twitter if your daughter into that or interested. Enjoy your day/ evening. Barbara
  • bustergut1
    bustergut1

    Posted

    Hi sillio2007 thanks for asking. The infusion was fairly boring & nothing to report. Afterwards I felt as though I was 'glowing'. Like having wind/ sunburn to face & body. My husband also said I had rosey glow & it felt like constant hot flush. This went on for about a week. I also felt extremely tired/ drained of energy but don't know if that was because of baby arriving & all the running around & looking after grandson. I'm also not sleeping that well probably because hi dosage steroids can keep you awake & I'm  spending most nights on sofa sleeping & waking. Actually going up to bed I can lay there awake for hours which is not great for me or husband. I checked out the possible less common side effects of vedolizumab & flushing & extreme tiredness/ drained was mentioned. Second  infusion next Tuesday 2nd. Will get blood test before that & have left message on ibd phone re side effects. Will keep you posted. Glad all good with you. Barbara 
  • bustergut1
    bustergut1

    Posted

    Sorry typo error meant sillip2007
Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.